Waving Goodbye to Hand Hobbies 👋

[Vicrum88]

Hi Everyone!

I'm back with another topic and more questions!

My post today is revolves mainly around Rauynards Phenomenon and mobility issues caused by various illness whether it's Scleroderma, Lupus, MCTD, Arthritis etc.

I've been a musician for over 22years now and I have learned to play over 20 different woodwind instruments ranging from the smallest Piccalo to instruments as big as the Bassoon. My music has always been my way of escaping from reality and it's very much been my main "outlet" for my emotions and stresses in life.

Like most of us on here, I suffer with Rauynards syndrome and its annoyingly an often occurrence and it's making it more and more difficult to play music.

My main instruments are Clarinet and Alto Sax. Both have a LOT of key scales and are heavy instruments. Both also require a firm grip on the mouthpiece in order for the reed to work.

I've realised that my fingers are now often too numb for me to press the keys with, and when my fingers aren't numb, they're very stiff and painful. I'm also having serious issues with my coordination/fine motor skills. My problem with the mouthpiece is that the corners of my mouth feel rather tight these days and the muscles around my mouth ache so much when playing that stops me from playing as often as I'd like to. On top of that, my arms, shoulders and neck are agony from the weight of the instruments. I use thumb rests and padded neck straps but they don't help.

I didn't anticipate this happening for some reason. I never considered that I might have to give up something I truly love because of my diagnosis.

Upon my discovery, I quickly realised that there will be people out there in exactly the same situation as me. People who love to sew, knit, paint, draw....

So, I'd love to know if any of you guys have had to adapt your hobbies because of Rauynards? And what did you replace your hobby with?

Another discovery and realisation! - I officially have a bucket list for my legs! I'm not even joking!

I realised the other day that I've only got a few years left of the use of my legs. I'm on walking sticks already and I know this is progressive so time is ticking! I want to go to Thailand and hike up into the hills to see the Buddhist Temples. I want to swim in the sea of countries I've never been to!.....

But then I realised what I want to do more than anything else..... I want to go out somewhere and dance my little legs off. Nothing crazy. Just a dance with my girlfriend's and family before the time comes where I can't do it at all. I used to do Ballet dancing and Scottish Highland Dancing so getting my head around the things I cannot do these days is hard!!

So, Ladies and Gents! - let me know your thoughts and your own experiences! I can't wait to hear from you guys!!!

With love and respect,

H.G xoxox

[Joan59]

Hi I feel your pain. I have SSc and Raynauds and like everyone we have all had to change our lives. Don’t laugh at the age of 40 I learned to scuba dive and, my husband said hey let’s get a motorcycle so I learnt how to ride one and got my full license and was enjoying life when POW 💥 I was struck down with Raynauds first so have to give up scuba diving 🤿 because I found my dexterity when in the depths of the water would become dangerous not only for me but also for my buddy so I gave it up and my motorcycle because too cold. So I took up singing and got as far as Grade 5 London college of music. Like you I loved to play music Clarinet I had played since school and guitar but sadly because of pain and numbness in both hands had to stop that too. I also had to give up nursing after 42 years. So what did I do I took keyboard lessons and got as far as G5 London school of music. I still do this but not as often because my fingers still go very cold whilst playing. I enjoy walking my dog with hand and feet wormers but Carnot be out in this weather or more than an hour. I also read rekindled my love for reading.

Hope this helps.

Chin up.

Joan59 x

[Hidden]

Hi there. Well Firstly I’m so sorry you’ve had to give up a creative outlet you love. And yes I do know how this feels - although not just because of Raynaud’s.

I used to paint and stitch for a living - but I got bad with painting due to severe eczema - which felt bad even with gloves. I’m messy and loved the sensuality of paint. Then I took up embroidery but along came Rheumatoid Arthritis suddenly and this eventually became too hard on my hands. So I went for drawing with pens. I still do this but the fatigue of my connective tissue diseases and a bad neck and dry eyes really get in the way of me working for more than 30-60 minutes a day in this way.

Years ago I quit the french horn, which I loved, because of perioral dermatitis and eczema. I tried to carry on piano but my heart wasn’t in it. So I joined a couple of choirs and absolutely loved singing and the challenge of reading music shifted from instrumental to vocal. I did this for 30 wonderful years before Sjögren’s attacked my vocal chords too badly. I would also have heavy duty spontaneous nose bleeds from my dry nostrils so finally quit this too.

Now I tend to work to commissioned drawings at my own pace - but only when I’m suitably inspired and driven because Raynaud’s, neuropathy and Erythromelagia mean that, like you, I’ve lost a lot of sensation in my finger pads. Also the fatigue often overwhelms me these days.

I’ll tell you something though. I knew an older chap who lived in my former home town. He had scleroderma and Sjögren’s like me. He used to go out walking dressed up to the nines with moisture chamber dark lense goggles on every day right around the small town where I lived. He lived to be in his 80s still walking daily, until pneumonia finally took him. So I wouldn’t assume that you’ll lose the use of your legs soon too. My legs are rather flawed as the numbness means I lose my balance and can’t stand still for long. So for years now I have carried a fold out perching stick. It’s very light weight and some days I’m not really up for doing much because this disease overlap has mostly affected my guts from top to tail so I can’t risk being too far from toilets. A physiotherapist told me to get a rotator with a seat a few years ago but I refused and I’m so glad that I still walk the dogs most days although only with my husband.

But I can still listen to favourite music and if it’s choral/ vocal I can sing along with my dusky scratchy voice. And sometimes I dance and let it all just envelop me and so, in this way, I keep my creative energies utilised by pacing and just taking each day as it comes. 😊

[pinkcat26]

My fingers have also become stiff and Raynauds is often a problem for me too. I used to do a lot of embroidery and cross stitch, but find it increasingly more difficult, so I have switched to sewing with my machine. I used to sew a lot years ago when my children were young, but have now rekindled this hobby and make things for my grandchildren now. I gave myself the challenge last year not to buy any clothes (except underwear) for a year, instead making anything i needed. I completed this challenge in February, but have decided to continue making myself all my clothes

[elprof57]

Dear vicrum88. I have read all your posts and l sincerely express my most profound solidarity. I have had scleroderma in a mild form since Nov 2011 when l had just turned 54.l also like music and play the guitar as a hobby. As l said l have a begign form of scleroderma and l till now l can't say l have suffered much. However mild though, scleroderma has made my hands and l presume yours and others puffy and my fingers sausage - like. The swelling subsides in the course of the day but nonetheless my hands remain a bit swollen. This affects the way l play. Being an amateur l am not all that worried but l want to stress the fact that we must not let this condition win us over and that we must resort to any measure possible in order to lead a decent existence and to continue doing the activities we cherish. All the best.

[Liverbird41]

Hi, I have LCSS and Raynauds and I'm an Early Years Teacher. I have had it since childhood but only had a diagnosis in my late twenties. Thankfully I am still able to do everything at the moment. I garden during the summer months and bake different things too. I recently took up embroidery and knitting. I also bought a Cricut Joy crafting machine. Sometimes I have to adapt such as when I was repotting my plants yesterday I did it indoors as it was too cold. Sorry to hear you're having to give up certain things.